Wednesday, February 8, 2012

Lupus: Down and out and caring for the kids – an objective perspective.

Johnny’s bout of the flu bug is finally coming to an end.
He’s still not 100%, but as he declared, the true benchmark of his wellness is
that he can do voices while reading books to the girls. And his funny little voices
are back…so life is slowly returning to normal.

But having watched him struggle so, I realized once again
how hard it would be to take care of the girls if I were sick. I’ve never
underestimated how difficult it must be for those moms and dads out there whose diseases are flaring…I know how lucky I’ve been to have kept those flares
at bay since the girls have been around. But knowing how hard Johnny was trying to manage the "fun, upbeat Dad" routine, despite his illness, I realize that it would be my own expectations as a supermom that I would have to have deal with.

I was away for a couple of days while he was sick, and I encouraged him to find ways to conserve
his energy…so that he would somehow find a way of get up the next morning and do it all over again. He figured out a few things for himself, of course, but I think he appreciated the suggestions. Things like letting the girls play by themselves as long as
they were within ear shot (and safe, of course), watching as many movies as
they could, or recruiting the neighbor girls to come and help seemed like the
most obvious, practical options for a sick parent to employ. And yet – if I
were in his shoes, I know how hard it would be to make those things happen
without feeling guilty – without feeling like I was shirking my responsibility
– without feeling as if I was letting my
girls down.

But should the time come to pass, I’ll just think of Johnny.
I’ll remember how simple it was to dole out that advice, and how sensible it seemed for him to do whatever he could to rest and take it easy. He did pretty well –
and most importantly he made it through – but from an objective perspective, I
know he could have done more (or is that less?) to give himself a
break.

Most importantly, however, I know I could have done more.
I’d toyed with the idea of scheduling Paola, our au pair, to work on the
weekend while I was away, but when I asked him if he wanted her to work, he
said no. He was sure he’d feel better by the time the weekend came. But as a
caretaker, and as someone who’s been there, I should have known. I should have ignored his positivity and hopefulness (that I so often have exuded), and
lined up the babysitter so that the option was already in place. It wouldn’t have been on him to decide that he was really too sick - the decision would have already been made for him. So that when he woke up feeling absolutely awful, he wasn’t forced into putting on a happy face when he was feeling anything but. (And how many times have we lupites done that?)

So caretakers, take note: while you must tread carefully
when it comes to inserting yourself into the life of your loved ones (which is another post...), I do
believe that trying to anticipate their needs and having contingency plans
in place are essential. You can't force your plans, of course, but having assistance ready and pre-arranged is going to be awfully hard for your sickly loved
one to refuse.